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Avatar universal

To treat or not to treat?

I have been diagnosed with Hep C, and my Doctor recommends treatment, but I'm scared of the side effects, and worried that it might be all for nothing - i.e. a low chance of success.  I'm looking for any feedback or comments.

About Me:
Male 53 years old
152 lbs (Having lost 100 lbs thru diet and exercise over the past 14 months)
Genotype 1
Viral load 4.37 Million
Stage 3 Fibrosis, degree of inflammation 2/4, no fatty liver
Previously suffered from depression & suicidal ideas.  Severe enough to miss many months from work.  No longer depressed an not on medication.  (Didn't do well on medication, having tried a half dozen different meds.)
Low tolerance for pain and sickness (big baby in other words.)

Other than the bad news from the Doctor, I'm currently feeling in the best health of my entire life.  I'm worried that treatment will drive me back into depression, and that Genotype 1 with a high viral load has a low percentage probability of successful treatment.  Do I have my facts straight?

Any feedback would be welcome, thanks in advance.
12 Responses
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446474 tn?1446347682
Remember you can always try the treatment so see how you respond. If you can do 4 weeks and even make it to 12 weeks you will have a pretty good idea if treatment will work for you. If you became undetectable by week 4 you have a 90% chance of SVR. So even if you had to stop treatment you would know that you could retreat at some point and lick this thing. Stopping the advancement of your liver disease.

I totally understand you saying you rather die than go back into that deep black hell hole of depression. I lived there for many years and would probably pull the plug if I ever knew I had to good back there again for any extended period of time. I figure I served my time and then some in that living death.

Personally I would work on finding a med that worked for your depression. It took me years to find one that worked and I tried just about all that were on the market at that time. I ended up on Parnate. Yeah Parnate, crasy as it sounds. That dirty old drug. But it worked for me. And that was the bottom line. It got me started on my way out of Dante's Inferno. In fact I tried a number of newer meds before I did treatment this year and none of the new fangiled stuff worked.(!) I ended up using a patch form of Parnate believe it or not. Since I have cirrhosis I only had to wear the patch every other day and use the lowest dosage patch they make. My liver doesn't filter drugs well so I can take 1/2 to 1/4 of what most people need.

Bottom line I had a dozen side effects that kicked my butt but thankfully no depression.

Whatever you decide best of luck to you!
Hector
Helpful - 0
338734 tn?1377160168
If you have had this disease for some time, perhaps you (or your doc) mistook the fatigue for depression. I complained of fatigue and poor sleep and several docs for years kept trying to put me on AD drugs to no benefit. Finally I pursued the issue (rather than "just take a Prozac") and started eliminating potential causes for fatigue. That's when I was diagnosed with HCV.

After TXing for about 8 weeks, I really became depressed. I now know the difference between severe fatigue and depression. I have been taking an AD since and it has made a huge difference.

Just a thought. ...

Good luck,
Brent
Helpful - 0
Avatar universal
Thanks to everyone who answered.  I have to think about this a little - I'm still a little bit in shock.  I had a real struggle with depression, and was not helped by any medication that I took.  I worked my way out of it on my own I guess, but now this is the thing that worries me the most.  I feel I'd rather die than face that again, and this might actually be the decision I now have to make.
Helpful - 0
446474 tn?1446347682
You are at stage 3 now, you do not want to be at stage 4 if you can help it because your chances of SVR go way down. Also being older, the fibrosis advances more quickly. Hopefully in time new treatments will shorten duration and be more successful then current the 40-50% for genotype 1s.

As far as managing depression while on treatment. You should work with your psychiatrist and get back on what ever antidepression meds work best for you BEFORE starting treatment. These meds can take from 4-6 weeks to start working. I've had many major depressive episodes in my life but had no problem with depression during treatment.

So nothing is guaranteed. Neither success or failure. You will never know until you try. We are unique individuals and respond differently.

There are many other issues that you may have to deal with during treatment so you want to give yourself the best chances of SVR going into this. So I would say find out everything you can about the pluses and minus of treating now vs. treating later.

Only you, know what is right for you at this time of your life.

Best of luck!
Hector
Helpful - 0
387294 tn?1207620185
I just finished with 24 weeks of tx.  The sides were noticeable but not debilitating.   I kept up with my normal life, my worse sides were nauseous feelings, sweating at the beginning.  I have no history of depression but did go on antidepressants during treatment and it helped.  I am 52.  I agree with the advice,  I would probably treat if I were you.  The younger and healthier your liver the better.  

I admire that you lost so much weight, good luck with your decision.  It is really yours to make, but many people get through treatment with being able to handle sides.
Helpful - 0
408795 tn?1324935675
I have decided to treat and if you look at my profile you can see that I am not yet a stage 3, well I wasn't 3 years ago.  I'm 54 and weigh about the same, I was diagnosed in 92.  I decided to tx because the only thing on my mind now is my HepC.  You could most likely get in a trial and maybe increase your chances of SVR.  I may be a stage 1, but I have plenty of symtoms.  The only thing you have to worry about is the depression, which could be a big deal so you may want to get something ahead of starting time.  If you think you can hang without getting too depressed, maybe you should give it a shot.  What do you have to lose?  If it don't work then at least you will know that you did everything that you could.  I wonder how much of your depression is related to having HepC?  Just thinking out loud really, I have been scared as well, but the bottom line is you don't know how bad your sx's are gonna be until you try.  Good luck with your decision.  later  
Helpful - 0
320078 tn?1278344720
I am treating am in week 25.  Sides have been severe (enough to miss a week of work) and then i have had some really great weeks. (dancing, concerts "normal")

I sill work full time and miss work only when really sick!

The decision to treat is a personal one, however  as Trish stated you are at Stage 3 Fibrosis from my understanding this disease progresses fasterthe further in your are.

My own opinion is to discuss TX with your doc, and also discuss the depressions side effects.  Perhaps start an anti depressant before started treatment.

Good luck with your decision.

Peace
Rita

Helpful - 0
Avatar universal
I treated for one year and had mild sides....just mild headaches and lost some muscle,but it gained it back...not everyone gets bad sides.
Helpful - 0
149675 tn?1416673133
I know how you feel as far as being scared and nervous about the side effects of the drugs. I was also and it kept me from treating for years. Frankly if you read some of the posts it will scare you. Heck if you read the info from the medicine itself it will scare you. Having said that so far my sides have not been intolerable but I like Gator have only been taking them a couple of weeks. I do feel some sides but it really is not that bad and definitely doable. In my Opinion being you have advanced to a stage 3 you should seriously think about treating. The older you get and the more advanced your liver gets the harder it is to treat. Being that you have already lost 100 lbs on your own and have your weight down to 153 is definitely in your favor. Also being that you have a history of depression the doctors will probably put you on a course of anti-depressants prior to starting I would guess. They would monitor you closely.

Because I was concerned about the sides and the low SVR rates of standard therapy I decided to participate in a trial for the polymerase inhibitor R7128 which uses the standard of Care (SOC) peg and riba in conjunction with the trial drug. I feel it has a lot of promise as another weapon in the arsenal against this disease. Telaprevir is another great drug as HCA pointed out. It is still in trials and is at least another couple of years from becoming FDA approved barring it has no setbacks (which it most likely will not).

Obviously this is Ultimately your decision to make and you have to weigh all of the factors and make what you are comfortable with. I personally would  treat if I were stage 3. I was never an advocate for rushing into treating but given your situation that is what I would do.
Helpful - 0
Avatar universal
You are stage 3 which means you have advanced liver disease.  Bridging fibrosis  -  next step is stage 4 - cirrhosis.  There are levels or cirrhosis as well.  I would recommend treating as soon as possible.  I am also stage 3.  No guarantee you will clear the virus but you can be guaranteed your liver disease will advance to cirrhosis if left untreated.  You can wait for better drugs over the next several years which gives you no guarantee again, maybe higher percentages.  Keep in mind, the more damage to the liver, the harder to clear the virus.  We are all scared, and they don't pass out a "raincheck" voucher to each of us that treat saying in case you don't clear the virus this time - we'll give a free pass to clear the next time.  As I said -  no guarantees.  Also, many doctors will not treat patients with a history of severe depression.  Recommend you inform your doctor of the previous depression and suicidal thoughts if considering treatment  The medication guide on peginterferon clearly states it can cause depression and suicidal thoughts.
So, you're facing a multitude of decisions and only you can make them.  You stated you are a big baby -  well this treatment is not for babies. If you don't approach treatment with a strong, determined, I AM GOING TO DO THIS ATTITUDE, then don't bother.  You asked for feedback, and that is what I have provided.  Good Luck in whatever you decide.
Trinity
Helpful - 0
524608 tn?1244418161
I was also worried about sides...so far I am tolerating meds well...only in my second week though. I guess I am more worried about how much worse it would be dying from this disease. I still have a lot of years left in me...I think...I want to make the most of them and live lift to the fullest. I also have GT 1b but stage 1.

Dr told me that I can wait but I didn't want to.
Helpful - 0
Avatar universal
HCA
You will have a better chance of success when the new drug Telaprevir is availible in about two years.
On balance maybe better to treat now-see how you do.Don't be put off by the scare stories,some people sail through it.Your history of mental illness is a concern-they will pull you off if suicidal ideation rears it's head.
Only you can decide.
Helpful - 0
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